Monday, 31 December 2012

My Dad passed away from a heart attack on New Years Day in 2003 - 10 years ago today.

I have written a poem in memory of Dad. My Dad was my hero and he believed in me. Even though I struggled emotionally with having a craniofacial syndrome, my Dad accepted it and sought for me to have the best life I could. He pushed me out into the world and encouraged me in everything I did. He was always proud of me. For that I am thankful.

Sunday, 30 December 2012

Today is New Years Eve. With Jessica being a runner and not liking loud noises, we will be steering clear of outdoor fireworks. Instead tonight we will stay home and play boardgames with the kids and they can watch the Sydney family fireworks on tv if they wish to before they go to bed.
Joe and I will then hang out watching a movie.

NYE is normally a time of reflection...on what has been and hopes for the future year.
This last year has been like most years for us - a busy one.

The most significant events from 2012 for the Woolsey family were:

* In January Jessica started school. As I have written about in previous blogs, she has Down syndrome and although she is high functioning, going to school caused us many nights of restless sleep. By her choice, by the end of week 2, she was in mainstream full time. It hasn't been an entirely easy year for her or for her teacher, but she has done well overall. The main benefits of mainstream for Jess have been her speech and social development. Academically she is low but she was not the only child in her class with learning difficulties.
In 2012 Melissa went into Year 6 and Nick into Year 3. They both have also had a good year. Melissa in particular has blossomed into a self-confident young lady who loves being on stage.

* In March Joe turned the big 5 0 and we had a celebration bbq lunch at the park where we got married, with Mum and our friends. It was a nice celebration.

* In September we went to Bribie Island for our annual family holiday.
Jess spent hours at the playground and Melissa and Nick loved the beach.

* A week after the holiday Nick had his big facial operation (Lefort III advancement via the RED). The movement of his facial bones took 1 month and then the frame stayed on for 3 months. (the halo frame is on until the end of January).
More on this further down.

* In November we were blessed with a new kitchen and appliances to replace our 30 year old kitchen where the oven and 2 of the stove burners did not work anymore. We love it!

Mixed in with these major events were weekly speech and occupational therapy sessions for Jessica; dance and swimming lessons for Jessica, Melissa and Nick; and Girls and Boys Brigade for Melissa and Nick. There were the usual school activities and Melissa went on school camp which she loved. Nick also went on Boys Brigade camp. It was the first time he had been away from home by himself. He also had a good time while I was at home worrying about him.

And I taught part-time with Joe being the carer doing the therapy sessions and frequent hospital appointments.

Managing Daily Life

We continued to manage Nick's Coeliac Disease and tried to broaden his food choices.

We also had to manage Jessica's behaviour and her lack of understanding due to her intellectual impairment. She has been very strong-willed and stubborn. She would dig her heels in and refuse to do what she was told. Rules, routines, consequences and rewards had to be regimentally implemented. Because of this behaviour and her love of silently running off there were many things we would have loved to have done but couldn't. No camping anymore - we got a unit at the beach for our holiday where the door was always locked...in the shops she was constrained to the shopping trolley as much as possible...when out as a family it was everyone's job to keep an eye on her...but even so she did manage to run off on us all and cause some anxious moments until we found her. On numerous occasions she also ran off at school, thankfully not out of the school grounds. God kept her safe.

Nick's facial op of course was the other majot event for the year and needed a lot of management. What we have gone through is documented in previous blogs. The first month was incredibly hard, watching Nick dealing with the pain of having the bones in his mid-face region moved forward about 2 cm. Providing him with food he could eat posed a challenge and keepiong weight on his small frame posed another challenge. And also our family activities have been curbed massively. These 6 weeks of Christmas holidays are not the normal ones. No swimming, no playcentres, no playgrounds, no bikes, rollerblading etc etc...we are at home, with the children playing on their electronic devices and playing with their toys. That's it. It is hard to read about all the fabulous things people are doing on Facebook, when we are doing very little.

The main life lesson for me this year has been ACCEPTANCE.

* Acceptance particularly of my circumstances.
* Acceptance that my family's daily activities are dictated by the disabilities that the 5 of us have.
* Acceptance that financially we are coping but it is hard. There is no money for luxuries.
* Acceptance that we can be happy and content when we dig into our faith daily and trust that God has everything under control. We can only see a moment in time whereas God can see the whole picture.
* I have also accepted that I must not work for material possessions but for God and God will bless me for my committment to that. I must be Jesus's hands and feet on this earth. This year I have had a very difficult group of youngsters with many behavioural, social and emotional issues. Knowing I was being Jesus's helper enabled me to have patience and to care for them as well as teach them. Each person is loved equally by God.

Saturday, 29 December 2012

The Weaver
My Life is but a weaving
between my Lord and me;
I cannot choose the
colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in
foolish pride,
Forget He sees the upper,
And I the under side.

Not
til the loom is silent
And the shuttles cease to fly,
Shall God unroll the
canvas
And explain the reason why.

The dark threads are as
needful
In the Weaver's skillful hand,
As the threads of gold and
silver
In the pattern He has planned.

He knows, He loves, He
cares,
Nothing this truth can dim.
He gives His very best to those
Who
leave the choice with Him.

Because God is already in our future He can see the pattern of our life. He can see the dark times we have gone through and He can see what we have learnt from them and how we have grown in character and strength.

Thursday, 20 December 2012

Christmas Holidays Spent at the Beach
My earliest memories of Christmas are of being in a caravan at the beach at Bribie Island. We would go to the Bongaree Caravan Park and I remember as a toddler carrying a lantern in the Christmas parade that was led by a beach mission group, meandering through the park.After a few years there we went to the Beachmere Caravan Park where we camped in a large marquee tent. Dad would load up the trailer and off we would go. Dad was always well prepared with a real double bed for Mum and Dad and bunks for us kids. A curtain up across the middle of the tent to separate bedroom from the living room gave some privacy. An ice box was the fridge. The beach and swing set were our playground. I remember learning how to do the time warp in the laundry room!
Dad would chop down a pine tree on the side of the road, we would plant it in a bucket, and decorate the tree with foil, crepe paper and some decorations. Simple but special.
When I was a teenager and the Beachmere camping sites were closed down, we went back to Bribie to the Banksia Beach Caravan Park and camped in a caravan. My childhood and teenage years were filled with days of salt water, sand and sunburn.

Christmas Day - Changes over time

Santa always found us in the tent and caravan. I especially remember getting my first bike when I was 11 years old - I was so excited! And every year we got a packet of lollies with our one present. The present usually included a few things but there was only one parcel (now my children's gifts are wrapped separately so they get many).

Christmas lunch was always held at my Nana and Pop's house. They actually lived next door to us, which I loved.

From mid-childhood it became my job to put up their Christmas tree which I continued to do until they moved into their nursing home.

On Christmas Day we would open our presents and go to church. Dad was always like a big kid with his infectious anticipation of what was in our presents. No matter what he was given he was always so excited and happy.

My Dad's parents lived in the next street so we would go and visit them after church. Often my cousins from out west would be there and we would play in the backyard, running around the garden paths. My grandfather was a prolific gardener.

For lunch we would go over to Nana and Pop's. My cousins, aunts and uncles, would all come. And what a wonderful time it was! Nana cooked a traditional hot roast (chicken or turkey or pork) and vegie lunch with plum pudding, custard and jelly for dessert. In the home made plum pudding Nana would put threepences and sixpences - if you got one it was meant to equal good luck - we were always excited to know whether we were going to get one!
In the afternoon the adults would have a nap and the children would play. If it was really hot we would play under the water sprinkler, or in their old metal bath tubs filled with water. There were no water restrictions back then and no air conditioning.

After Nana and Pop went into the nursing home Christmas lunch moved to my parent's house, minus the cousins, but with occasionally an aunt or uncle..but not the big get-together we previously had. A bbq lunch with roast turkey, salad and prawns, became the new Christmas lunch. Desserts consisted of plum pudding, custard, trifle, jelly and fruit. Dad would wear a Christmas hat and be happy. Mum would be teary and stressed. One Christmas Dad burnt off his eyebrows whilst turning on the bbq and blamed Joe for it - too funny - that was my Dad...he had a sense of humour.

Nana then passed on, so Pop just came... then Pop passed on so it was just our family,,,then Dad passed on..and Mum didn't want to do Christmas.... So Christmas moved to our place for a couple of years with Mum and my brother and his family coming to us. We went back to a traditional hot roast chicken and vegie lunch, with ice-cream for dessert. I wanted to stay with my happy childhood memories. But no water play - just air conditioning. But we did include a pinata and a chocolate gold coin hunt when Melissa and Nick were little.

After a few years Mum decided that she wanted to do Christmas again so we now go to her house after church, and we have cold roast turkey and salad. Mum and I have plum pudding and custard, for dessert and everyone else tends to have fruit and/or ice-cream. It's a combination of the old and the new.

The kids spend the day playing with all my old toys and in my old room, or trying out their skates/scooters/bikes on the long concrete driveway.

Their memories will be very different to mine.

Times have changed and my childhood memories I keep close to my heart. Even though my children's memories will be very different to mine - they will remember the opening of presents, going to church, then going to Gran's house to have lunch (and sometimes dinner as well) where sometimes my brother and his family would also be..other times it would be just us....but that is ok...because Christmases do change over time.

I love the real reason for Christmas - the birth of Jesus. I have my nativity scene out on display all year round - Jesus is at the centre of my faith. And I hang on to that when I am bombarded with all the secular and materialistic messages that come through the tv everyday telling you to spend, spend, spend up big to have the perfect Christmas. Gifts, gifts, gifts, food, food, food. I don't want Christmas to put my family into chronic debt so I find that I have to try to tune out to this bombardment though at times it is hard to do so. Who wouldn't want to have a $1000 diamond ring under the Christmas tree or to eat a turducken for Christmas lunch?!

Christmas can be depressing. Lack of money and missing passed on family members makes it a difficult time of year. This year I have made a concerted effort to focus my mind on what I have, not what I haven't got. My joy this Christmas season has come to me by....

Watching the children put up the Christmas tree, singing and twirling and covering themselves in tinsel, choosing which ornaments to put on the tree and looking at the special ones with their names on them.

Visiting homes lit up with thousands of lights and colours which paint their faces with magical wonderment.

Seeing the children participating in our church's Christmas Carols concert as angels.

Watching Jessica's face light up when she sees Santa Claus.

Listening to them counting down the days with growing excitement.... these simple things bring great joy and a smile to my face. No amount of money can buy these heart gifts.

Buying the Gifts

As I've already said, we don't have a lot of money. We basically live from pay to pay. With me working part-time and Joe being the carer, taking the children to all their freequent hospital appointments and Jess to her weekly therapies, means we do not earn much. But we do have plenty of love. Christmas is hard...and I commiserate with all other people on limited incomes.
Before children it was fantastic to be able to buy lots of presents and spend our money on frivolous things..but not now. It has become...a limit spent on each child's gifts, re-gifting for relatives and friends, buying things on sale, making things, and a semi-bare pantry and fridge. The Children's Gifts
This year Melissa and Nick have been very well prepared with their Christmas lists. They first wrote their letter to Santa, which were posted in our local mailbox. Next they meticulously went through the toy catalogues which are put in our letter box, choosing what they want. (They get a present from Santa and some presents from us).
A list was devised, numbered in the order of their favourites, with prices and the stores they were at! They were told that they would not get everything on their lists and if we couldn't get their requests we would buy them gift cards so they could buy something of their own choice. I was actually quite impressed by their lists as it made it very easy for us to work out equal spending and we didn't have to go store to store hunting for their requests. I am not a window shopper or a browser - I shop like a man (sorry if I offend) - I go straight to the store and buy the item.

I had planned to buy the kids' presents with cash I had saved over time but with a few bills lately to pay I had dug into that jar... which meant we didn't quite have enough, so I was looking at using the dreaded credit card. But my God does supply my needs as it is written in the Bible, as a lovely angel delivered some money to us that day - perfect amount and perfect timing.

Jess on the other hand has no concept of Christmas presents. She adores Santa - but he MUST be called Santa Claus! Jess gets so excited when she sees Santa in person or on tv. She doesn't have a long list of desired toys - infact she has no list. She has not been hooked into this world's materialistic drive. She has named her baby doll Jesus and has been carrying her doll around. Her heart is in the right place. Last year Jess was happy with the first present she opened - she didn't want to open any others and I am guessing this year won't be too different. She has a lot to teach the rest of us.

Jessica has just finished her first year at mainstream school, called Prep here in Queensland. Last year we deliberated and deliberated and mulled over and stressed over what to do with her - would we put her in the special school, in the mainstream school or a bit of both. Sitting on the fence seemed the safest thing to do and we put her in both schools to begin with. By the second week Jess had told us by her behaviour that she did not want to go to the special school (school refusal big time!), so we put her full-time in the mainstream setting, praying that she would be ok.
She was more than ok. The other children in her class adored her and fussed over her, her speech developed, and she understood and participated appropriately in the school setting. The only real problems were that she would run off (the rest of the class were also very good at keeping on eye on this as well) and she would not get out of the sand pit or playground. Also towards the end of the year she would avoid tasks she thought were too hard. These behaviours meant some management strategies e.g. locked doors, counting to allow her processing time. and visual signs for Jess. Kindness but also rules with consequences/rewards were needed. She understood time out and didn't like to go there! Academically she was at the bottom of the class with another child, so at least she was not alone.
Jess was verified as being intellectually impaired which meant she would be able to receive extra help.
A few weeks ago we went to see her perform in her end of year school concert. She amazed everyone with her performance - she came right to the front, and knew all the words and actions.
Tears clouded my eyes - 5 years of pent up emotions came to the fore. My little girl who I had all those fears about when she was diagnosed, was just like the rest of the class....she was just like a regular child.
Here is the youtube video for you to see. I am a very proud mummy!

After Jessica was born and we found out that she had Down syndrome, I went into a period of depression and mourning. She was not the baby that I was expecting and I did not know what the future held for her and for us as a family. We were expecting her to either have a mild form of Crouzons or no syndrome at all. It was a huge shock to know that she had Down syndrome instead (and thankfully no Crouzons with it). But I did not know anything about Downs, nor did I know anyone with Downs, and my world collapsed. So many irrational things would go through my mind...fear of the unknown quickly took over and devoured me.

I was sent this story and it encaptulates exactly how I was feeling...

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. Emily Perl Kingsley 1987
I am now enjoying the uniqueness of Holland!

Saturday, 1 December 2012

I had a pity party this week. Yes I did. It could have been hormones or all the fabulous things people were doing and uploading to facebook....who knows but I was feeling sorry for myself.

How sucky was my life?

How unfair that myself and my children were born with this craniofacial syndrome and that our Summer holidays would be dictated by Nick's halo. Basically indoor quiet activities only.

How unfair was it that my youngest daughter had Down syndrome, and although she is high functioning and gorgeous to boot, her love of running off, also dictates and limits what activities we can do. There will be no going to activities where there is a possibility of us losing her.

How unfair was it that my visual impairment stops me from driving and I can't go and do the things that I would like to.

How unfair that my husband's stuffed wrist stops him from lifting things..... 'thorns in the flesh'..... all make our life sucky.

But then the next day after I was having my pity party, I found out that my friend's husband had committed suicide. Woo - I kicked myself up the butt and changed my attitude very quickly.

My cup is half-full...it is not half-empty.

My life though not as I would have wanted could be far worse.

I will choose to focus on my blessings, not on my deficits.

My children are happy....my children are loved and cared for....they are brave.....they are cherished....I can see.....I am happy..... my husband can carry light things.....he is a great 'taxi' driver... we have a happy marriage...we do not have as much money as we would like but we can pay our bills...we have a roof over our head and food in our tummies.

Once home I continued to turn Nick's screws, one turn, morning and night. This turning moved the mid-face bones forward 1mm per day...this tricks the body into making new bone as it tries to heal itself.

Nick went back to the hospital twice a week for checkups for the next few weeks. The process of moving his bones and getting them into the required positions ended up being more complicated than Melissa's was. Melissa's bones came start out forward. Nick's were moved forward but also moved downwards. The eyesockets were moved down to allow for the eyeballs to sit in the eyesockets and his upper jaw was moved vertically down to align his bite as his back teeth were touching first which was not good. This meant that the bar was moved down, and the mechanisms on the bar were moved down as well. All of this hurt of course and Nick needed a lot of emotional support to get through it.

Nick had a final xray which determined that it was time to stop turning the screws. His cheekbones had actually been over-distracted (come too far forward) so the plastic surgeon loosened the cheekbone screws with the hope that the bones would retract a bit.

It was hard to tell exactly how far forward Nick's bones had been advanced due to the manipulation, but approximately 22mm - close to an inch.

Nick has slowly been changing back to his happy self. The pain is now basically gone. When I wipe his face to clean up the gunk that weeps from his eyes, I have to be gentle as he says his bones hurt when I do it.

We have to watch his wounds for infection.

Nick 7 weeks post-surgery

He mainly spends his time at home. After visiting his class the Monday after he got home... and seeing their shocked reaction... he hasn't wanted to go back. We have encouraged him to go to school as a visitor to various end-of-school-year events so he is becoming less of a spectacle.

Today he was chosen by our Pastor to light the first advent candle....for 'Hope'. He declined to begin with but with encouragement from me and Melissa he agreed.

At the end of church he said he wanted to be in the church concert on stage and the community Christmas Carols - I guess having everyone clap his bravery made him even more brave!

We go back to see the plastic surgeon on December 14 for a progress report. Nick will have the halo on until January/February. It is going to be a long Summer holiday.

Nick stayed in PICU for two days. He was well enough to go to the ward the next day but there were no beds so he stayed in PICU another night which I was happy about because that meant one-on-one nursing care.

Again I slept in a recliner beside the bed. I needed to be there incase he woke up...which he did...and though his eyes were swollen shut and he could not see me...he knew I was there.

At 4.30am in the morning I was woken up by the nurse and shunted out to the parent lounge to sleep on the couch as a baby was coming into PICU and they wanted to give my recliner to the mother. I snoozed for an hour and then went back to be with Nick.

Back in the ward Nick coped as best as he could. He was on background morphine and a morphine bolis...but after a few days he hardly used the bolis. It wasn't long and he was only on panadol. Nick amazed me with his high pain tolerance.

Because his bone was just sitting in the muscles he had to eat pureed food, soft or liquids. Nick could not master a straw so I would syringe the milk into his mouth.

On the Monday after the operation the wires were attached from his mouth plate to the black vertical rod. This really hurt Nick and he had a panic attack. We found out the following Friday after Nick had an xray that the plastics registrar had accidentally moved the bones forward when attaching the wires - he was not supposed to do this... No wonder Nick was crying and saying it hurt!

I started turning the screws (cheekbones and upper jaw) on Tuesday, a week after the operation and we started the advancement process. Nick started to get bouts of anxiety and OT became involved. Nick was not eager to talk to the OT Carly, but I was able to talk to him after she had left each day. Nick was told by the plastics registrar that once we start turning the screws we could not stop.

Nick got very low and nothing could cheer him. We took him to Southbank for some time out which did seem to help.

Before he could go home Nick needed to see the plastic surgeon and the dentist. The dentist noticed that Nick's upper jaw was already in front of his bottom jaw - it was already where it should be! Nick was sent for an xray. It showed that the plastics registrar had moved his top jaw forward accidentally when he had attached the wires to the mouth plate, then I had wound it forward a further 4mm. We were not to turn the lower screws from then on...just the cheekbone screws.

On Day 10 post-surgery we took him home. Going home did lift his spirits.

We were at the hospital at 6.45am. Nick had fasted. We were fortunate that Nick was first on the list so we would not have the long wait that we had with Melissa. There was a PICU bed available for him.

We saw the anaesthetist and tried to act calm to keep Nick calm.

It wasn't long and we were called and went to wait in the waiting room outside of the theatre. We knew the nurse there from all the previous operations so we had a friendly chat and catch-up with her. Other parents who were there waiting with their littlies stared at us.

Nick wanted me to go into the theatre room with him so I donned the gown and hat.

It wasn't long - about 8.30am when the nurse came out through the theatre doors to collect Nick.

He climbed up onto the table and breathed in the gas...putting him to sleep. I prayed a silent prayer over him for God to keep him safe, and I kissed him....and left.

You know it is hard leaving your child on that table not knowing what is going to happen...if there will be complications..leaving your child in other people's hands. Yes they are trained professionals but things happen.

Joe and I decided that we would do what we always do when there is going to be a long operation...we would walk to Southbank...so we did in silence, holding hands...gathering strength from each other.

It was hot and there was a nice river breeze so we decided to go and find a park bench on the river walk to sit on. When we sat down Joe saw written in chalk on the arm, 'God loves you...Jesus is Lord.' We felt this was a sign from God telling us that He was there in that operating table looking over Nick and the surgeons. There were also 2 seagulls who I named Fred and Fredda who kept us company. I always think of my dad who passed away in 2003 when I see birds as he liked birds and when my Mum was having a colonoscopy after Dad's passing, there was a bird tapping on her hospital window. I felt comforted to think that Dad was there too.

It was about 4pm when we finally got to see Nick again. There had been complications during the operation. His cheekbones were as thin as paper and had fractured so titanium plates were attached to them. These titanium plates were used also to help secure the wires into the cheekbones (which we didn't know he was having as Melissa didn't have them). He also had a lot of blood loss and needed a lot of blood.

We eventually saw him in PICU. I was able to stay the night beside the bed in a recliner as there were no parent beds available. He woke up during the night and had vomiting. He nose bled continuously from the bleed.

The next day his eyes started to close. We would not see them open for a few more days.

Saturday, 6 October 2012

This coming Tuesday, the 9th of October, Nick is going into hospital to have his Lefort III Mid-face Advancement using the RED (halo) operation. Melissa had this done two years ago.

The same procedure will be used for both children but for different reasons. Melissa's was primarily done for her severe sleep apnoea, Nick's will be done because of his severe proptosis (bulgy eyes). (His eyes could pop out at any time, and they are red all the time which could be causing damage).

Earlier in the year Nick had a CT scan on his skull and we heard nothing from the hospital until July. We received an appointment to see the plastic surgeon on the 10th of August. We were expecting him to say that he'll do the op next year in 2013 when Nick is 9 years old, as that was the age Melissa was...but he said he wanted to do it straight away and he pulled out his booking book. He even re-arranged some bookings to fit Nick in! This news sent Nick into a panic attack and we had to calm him down. We also were quietly shocked but staying strong for Nick. The op had arrived!

It took a little while to come to terms with the news. Then we had to think about what we did to prepare for Melissa's. We went shopping for front-opening shirts and bought Nick some toys to take with him to hospital.

I had to apply for 4 weeks leave from school which was dependent on the hospital booking letter. So we waited impatiently for that to arrive. It did arrive. There was the physical evidence in writing...a few butterflies in the stomach. Then the hospital rang to confirm...a few more butterflies in the stomach! After which Nick had 2 pre-op dental appointments - one to take x-rays and to put in spacers between his top teeth, and the second to take a mould of his top teeth to make the plate that will be used as part of the RED. Earlier in the year he had moulds taken of his top and bottom teeth to see how much recession was happening with his jaws. When he had them done the first time, Nick had a panic attack and had to be held down. This last time he was much calmer.

This weekend we are encouraging Nick to eat as much as he can too as he will lose a lot of weight over the course of the procedure and he is already very skinny due to his Coeliac Disease.

We have been talking to Nick about the operation to prepare him, but not freak him out. I don't know how he is going to cope.

It is interesting that Melissa does not remember very much about her halo at all. She has blanked most of it out of her memory.

Since Thursday we have kept Nick at home away from people. We don't want him getting sick or the operation will be cancelled. One of Nick's earlier ops was cancelled due to sickness so we are not taking any chances. He has had some hay fever so he has been using an antihistamine nasal spray. It's hard not to feel paranoid. Nick seems pretty calm but has been exhibiting some extroverted behaviour - being our family clown.

Friends have started to pray for Nick and our church family will be praying for him tomorrow collectively in church. God is watching over Nick and is in control of the situation. I am feeling calm and at peace.

Well I started this blog in July with the intention of telling my story, to help people, maybe even inspire people. To tell you that no matter the hardships in your life you need to keep going. Have faith in God and never give up. Take one day at a time, even one hour at a time when life is at its toughest.

I have given brief recounts of the major events that have happened to me and my family up to today - the 6th of October, 2012. From now on I will talk about ancedotes from the past, and things that are happening currently.

Two children were having a play fight with their lunch boxes outside the Prep room. Jess unwittingly stepped in between them and was hit on the face with one of the lunch boxes, leaving a red mark. She received first aid.

For the next month she didn't want to go to school, she was being naughty at school and at home, and she kept saying at school and at home that the child had hit her on her face. Also, at her speech therapy she was showing aggressive behaviour with the toys (she made them fight). At home she no longer cuddled and kissed her favourite toys.

We tried to talk to her about what had happened and tell her that she was safe at school but again with her intellectual impairment we could not reason with her.

In desperation we rang DSAQ for advice which they gave. They were wonderful.

DSAQ sent us some visual stories to use with her. The child who hit her gave her a hug and drew her a picture. Of course that child had long ago forgotten about the incident. Also we were able to break the cycle by going to the beach for holidays, getting her away from the situation. We noticed at the beach that she started cuddling and kissing her toys again.

She hasn't been back to school yet since the incident so I am praying that she will be fine. Nick and I will be in hospital when she goes back to school so we will most likely have other issues to deal with. Hopefully the hit on the face will be forgotten.

She has been verified as having an intellectual impairment. Her IQ test came out as between 56-67. Intellectual Impairment is 70. Jess has poor fine motor skills so it was hard for her to do the activities that involved drawing (she is having OT fortnightly to help her with her fine motor skills). Jess's IQ will again be tested in Year 3. This labelling means she is under the care of the Special Education Unit at the school and will receive extra support.

Our personal educational goals for Jessica are that she is:
a) achieving her intellectual potential.
b) enjoying school.
c) accepted and has friends.

So far these goals are being attained.

Jess had an IEP which came up from Pre-Prep at the ECDU and she is starting on an EAP now she has been verified.

Jess is happy to go to school most of the time. She understands 'school life' and follows the expected routines and she sits on the floor and listens etc. She joins in most activities and loves movement, dance and singing activities. Jess has learnt her ABCs, numbers, months of the years, days of the weeks, shapes and phonics from songs. Jess's talking has improved amazingly - she speaks in sentences and is well understood. The children in her class adore her and 'baby' her - the teacher has to tell them to stop doing things for her. They even argue over her. Schoolwork is modified for Jess if she is not able to do what the others are doing. For example she can tell a story but does not have the hand control or spelling ability to be able to write a story, so it is dictated. The teacher has an Ipad which has activities on it just for Jess. Visuals have been put up in the room to help her behaviour. A behaviour plan has been implemented at school and is backed up at home. Jess does do 'runners' so the classroom is locked and visual strategies are being put into place to help stop her from taking off.

We were having trouble with Jess before school going to the out-of-bounds playground and sandpit (her two favourite things), and then we were having to physically remove her from them as she didn't want to leave.... so she now goes to her classroom and plays games as soon as she gets to school. Problem solved.

We cannot reason with Jess....so we have to put in strategies that she will understand. She is a visual learner (the Guidance Officer confirmed this with the IQ test).

So though there have been some challenges this year, we are learning how Jess works and finding solutions to these challenges.

The GO told me that Jess is in the right place for her to be...and as long as she is coping that is where she will stay.

Jess had a sleep study which showed slight sleep apnoea. It also showed that Jess was a very restless sleeper - which we already knew! She had been a restless sleeper from early on in her life. Jess would often move up and down her cot, then up and down her bed. When we first put her in her bed we found that she would fall out of it so we needed to put up a bed rail....and she would often leave her bed and be found on the floor or in Melissa's bed.

In the morning she would wake up very tired with tousled hair.

The Respiratory doctors suggested that she have her large tonsils and adenoids removed. It was hoped that this would help her to get more oxygen into her lungs, and help her to sleep better.....but as she would not be rated as a Category 1 it would be best for us to go privately, as the public waiting list was very long.

We took Jess to see the private ENT doctor. He agreed with Respiratory that she needed her tonsils and adenoids out - they were taking up half of her throat - so we made the operation appointment for the following Easter break holidays.

The time soon came and Jess went into hospital for her op.

Jess had to fast which I was really concerned about because Jess does not cope with change in routine. We didn't know how we would get her to understand that she could not eat.

But God came through and answered our prayer. We were rung by the anaesthetist who told us that she could have breakfast as it would be an afternoon operation. This solved the problem we had foreseen.

We went to the day waiting area and she sat in her bed for a while and played. We had brought her some comfort toys. She soon was bored and we went to the playroom which keep her entertained.

Back in the room we were still waiting. The other children in the room had been on IV infusions and were eating....so of course Jess wanted to eat! We had to physically remove her again from the day area so she could not see the food - I was not happy about the fact that they put her with children who were eating - how unfair on any child!

It came time for Jess to go in for her surgery and she went to sleep very quickly and calmly. We waited and it was only about half an hour or so before the doctor came out to tell us that everything had gone well. The tonsils and adenoids were bigger than what he had thought and were taking up about three-quarters of her throat. She could go home the next day. Too easy!

Jess woke up and took her pain medicine and antibiotics well.

She soon started doing her repetitive comfort behaviour - putting pegs in and out of a bucket over and over again. Then taking pen lids off and putting them on again over and over again.

The next morning Jess continued these comfort activities. She ate quite happily - Jess doesn't seem to feel pain at the same level that my other children do. And we went home.

Once we got home Jess continued to eat quite happily for a couple of days and then she decided that she did not want to eat - we think the pain finally sunk in. We tried to coax her with all her favourite foods but she refused. We kept the pain medicine up and forced her to drink water.... She would not drink anything else. Jess also decided that she would only listen to me and not Joe my husband....which meant that after I went back to school I had to ring home nad tell her over the phone to drink.... She was being very stubborn.

This week was a scary time as we didn't want her ending back up in hospital. And though well-meaning friends gave us lots of suggestions they had no idea what we were dealing with - we had a stubborn child with DS/intellectual impairment, who only eats a small range of foods and who will not eat anything else no matter what is offered.... This situation provides more challenges then for the regular child who will happily eat anything soft, cold and sweet. Not our Jess...

Again with her intellectual impairment we could not reason with her.

We had a paediatrician appointment and the doctor noticed that she did have an infection in the back of her throat which is probably the reason why she didn't want to eat....so Jess was put on more antibiotics. Soon after she went back to eating.

The operation was successful as she is a better sleeper and even though she still wakes up with tousled hair, she is not tired.

In 2011 it was time for Jess to start Kindy (also called Pre-Prep). She was with the same teacher that Melissa and Nick had and the teacher was enthusiastic about having her. With Federal funding Jess was able to have an aid to help her.

Jess enjoyed going to Kindy and being with the other children. At times she would show defiant behaviour and she would wander off. But she was able to follow the classroom routines and she was getting used to 'school' life.

Jess went to Kindy for a 5 day fortnight. She also went for two half days to the ECDU at the Special School. Jess enjoyed having the two teachers at the ECDU at her beck and call and had them wrapped around her little finger. There were things that we knew she could do that she wouldn't do at the ECDU unless she had help.

We began to notice one main difference between the two settings. When Jess came home from Kindy she was communicating verbally with us....when she came home from the ECDU she wasn't - she would use her Makaton sign language. Upon querying the ECDU we found out that the other children were non-verbal...so that's what she was. Another behaviour she picked up from the ECDU was hitting as one of the other children was a hitter. We weren't happy about that.

Jess needed to be around verbal children and appropriate behaviour. She modelled her behaviour on what the other children were doing.

Towards the end of 2011 we had to decide what to do for Prep in 2012. This was a huge dilemma. Where was the best place or her? Should she go mainstream, should she go to the ECDU, should she do part-time in each, or should she repeat Kindy????

We deliberated for a long time. I spent a lot of time praying for wisdom. I even made a pro/con checklist for both settings. We wanted to make the right decision. This was really foreign for us because with Melissa and Nick there was no decision to be made - they were both intelligent so they were going mainstream. Our concern with them was 'Would they be teased and would they fit in because of how they looked?'

Jess on the other hand had suspected intellectual impairment so could go to either settings. It was up to us.

After consultation with the Kindy, the Guidance Officer at the SEDU, having a tour of the Prep rooms at the Special School, and then talking to the Special Education teachers and the Principal at my school where she would be going mainstream, we made our decision.

Our main concern was based on the Kindy's comment, that they didn't think she would cope in mainstream because of her defiant behaviour at transition time and her running off. They thought she should repeat Kindy. The Special School GO disagreed with this. The GO thought that it would be better to have a repeat year of Year 12 if necessary so she could have more job training. The GO believed that another year of Kindy would not achieve a lot.

Our decision was...that we would sit on the fence and put her part-time in mainsream Prep (3 days a week) and part-time in the ECDU at the Special School (2 days a week) and we would basically see what she told us by her behaviour where she would like to be. We didn't want to unenrol from the Special School in case Jess didn't cope in mainstream.

Well it didn't take long for Jess to tell us where she wanted to be!

In the first week of school she went to Prep for 3 days at my school, and then she went for one day at the ECDU, due to a holiday. The next week she happily went to Prep and then on the Thursday when it was time to go to the ECDU she didn't want to go! So we didn't make her - we enrolled her full-time in mainstream. She had told us where she wanted to be!

And I must say she looked very cute in her school uniform. My baby was growing up and in school. I had to teach on the first day of school, so I didn't get to take her to her room but I checked on her later on in the day and she was doing well.